Should I stop all RA meds.

[mattcass]

If my Rheummy agrees that my ra meds are not working or not strong enough should I not stop taking them altogether now. matt

[Franm]

Hi Matt

My advice would be if you are not having an allergic reaction to meds - of which I have had numerous over past few months and its soul destroying- dont stop them.

You havent said how long you have been taking them. Some meds can take some time to get into your system. But if your rheumy doesnt think they are working they will change to something else. I had 3 weeks of total med free last year due to a really bad allergic reaction to hydroxychloquinine. I was in agony and wouldnt wish that on anyone. Be guided by them and if your symptoms haven t gone worse bare with it.

Hugs Fran x

[Someonesmother]

I am guessing they want you to continue even if you go on biologics? They may not be working totally but maybe they are working a little bit? I don;t think Hydroxy has done anything for me, but I wonder if I stop it if I will be even worse. It is the devil and the deep blue sea. roll on biologics for both of us!

[Sunflower62]

What meants are you currently on

[mattcass in reply to Sunflower62]

Hi Sunflower I am on Hydroxy & Sulphasalazine for my RA my respiratory team would only allow these meds because of my Lungs. matt

[Jora]

I certainly wouldn't stop them without advice of the Rheumy. You might not think that they are working, but you don't really know how the disease would progress without them. J

[magglen]

Whatever you do, don't make these decisions on your own. Always allow your consultant to be in charge. He/she knows best.

[Beverley-NRAS]

Hi mattcass,

I know you are having a horrid time of things at the moment. It is always difficult to make decisions when you are in pain. We know that all the evidence we have suggests that treating the disease with DMARDs provides the best possible outcome. It is hard to know how much control the drugs you have been on have given and what you would have like without them.

I know that you have been approved for biologics and are waiting to hear about anti-TNF treatment. The biologics are a completely different group of drugs to the standard DMARDs. There are no guarantees of course but they may work for you. I have put a link below to our publication on them for you to read:

nras.org.uk/publications/bi...

Certainly, I think that you need to talk things through with your rheumatology consultant to decide on your future course of action. As ever Matt, if you need to talk you can call us on:

0800 298 7650 Monday - Friday 9.30am - 4.30pm

best wishes

Beverley (NRAS Helpline)

[mattcass in reply to Beverley-NRAS]

Thank You Beverley, It never crossed my mind the biological drugs would not work and this really scares me I am near the edge with this constant 24/7 RA pain and as I have said to Fran I don't know if I am strong enough, And having this Lung infection is certainly not helping. mattcass

[Beverley-NRAS in reply to mattcass]

Hi matt,

Certainly the biologics are worth trying. I know you have tried a lot of medication for the pain already. I don't know if I have already given you these links on pain information but here they are again just in case:

britishpainsociety.org/

painconcern.org.uk/

escape-pain.org/

arthritisresearchuk.org/sho...

arthritisresearchuk.org/sho...

Best wishes

Beverley

[auntypank in reply to mattcass]

Hi Matt. poor you. I know how you feel. My RA has caused bronchiectasis and lung infections are so scary for me--- I usually end up in hospital on intravenous antibiotics. I have also noticed that a few days after getting over a lung bug my RA flares, lovely, isn't it? I feel cheated! worked hard all my life and wanted to enjoy retirement! I wish you all the best and hang in there. xx

[NeonkittyUK]

My advice is to ask your Rheumy asap ... phone him/her up asap as they may actually be doing a bit of something ... you could feel worse if you stop and they were actually giving a little bit of protection. Good luck. x

[Sweetpolly2016]

You probably should not stop the meds. Maybe try weaning yourself off to see how that works. Have you discussed with a rheumatologist? I know there are new meds on the market and each person reacts differently with the medications. See if your doctor can offer you alternative solution. Good luck. Hope you find some relief.